Sex and Disability, Part 1

In September, BBC news ran a story titled, Judge Approves Man’s Sterilisation in Legal First. I started reading the story expecting a familiar case of medical authorities making assumptions about what is and isn’t “normal,” leading to coercive surgical intervention. Not so. At least not exactly. Partway through the first few paragraphs of the news report I knew this story was much more complicated than I had imagined.

“First Time In England And Wales A Court Has Sanctioned A Man’s Sterilisation”

This is how the BBC reported the case:

A 36-year-old man referred to as DE had a long-standing, loving relationship with his girlfriend, PQ. Both had “learning disabilities.” DE lived with his parents. In 2010 they had a son together. This event led the families to take steps to make sure there wouldn’t be a second pregnancy, including separating the couple.

“Experts said he was capable of sexual consent but did not have the capacity to make decisions about contraception.”

The parents and local authorities petitioned to allow DE to be sterilized so that DE and PQ could continue their relationship. The parents and professionals involved established that DE didn’t want to have any more children and wanted to resume his relationship and regain the independence he had before, but that he “could not be relied upon to use condoms or other birth control methods.”

The Court of Protection in London heard the case and ruled that DE could be sterilized in order to, in the court’s words, resume “as normal a life as possible as soon as possible.”

In her ruling, Mrs. Justice Eleanor King clearly explained that this was not a precedent-setting case, and that the decision was specific to these particular circumstances and not likely to be applied to others.

Equal Access To Life For People With Intellectual And Developmental Disabilities

I expected this story to be primarily about sterilization, but it’s much more than that. It centers around the way many people in places like Britain and the United States think about adults with intellectual and developmental disabilities (I/DD from here on) and their potential for romantic relationships, sex, and being parents.

Should people with I/DD be allowed to have sex? Maybe you’ve never thought about the question, but it’s one that disability rights communities come up against a lot.

How would you answer the question?

Many have pondered this dilemma, but for some it’s not even a question; they believe firmly that people with I/DD should not have sex.

I disagree wholeheartedly with this statement. I believe that all people should be supported in pursuing personal, fulfilling relationships that may or may not include sexual activity. Everyone should receive sex education in open, inclusive settings and learn about making safe choices and how to deal with the relationship troubles we all encounter during our lives. Groups like The Arc, Autism NOW, and Planned Parenthood take a similar stance.

I’ll explain more by looking at three common reasons people argue that people with I/DD shouldn’t have sex, be in romantic relationships, or have children:

That they should be sheltered from sex because they are essentially children.

That people with I/DD having children would lead to more people with I/DD.

That people with I/DD should not have children because they would cost public resources.

1) Adults with I/DD

Historically, and still very often today, doctors, professionals, and the general public have seen people with I/DD as perpetual children or as in some way asexual. It’s difficult to pinpoint where this construction came from, but it’s evident in a lot of the ways adults with I/DD are treated in society. It’s even reflected in the way researchers like Alfred Binet and Theodore Simon developed the flawed, but nevertheless ubiquitous, “intelligence quotient” (IQ) in the first decade of the 20th century. They calculated IQ by dividing an individual’s “mental age” by her or his chronological age and multiplying by 100.

Today it’s still common to hear adults with I/DD described as having, for example, the “mind of a seventh-grader.” This might be vaguely accurate when describing development, but is often generalized to apply to the entire person, as if somehow she or he is really just a six-foot 12-year-old.

Many advocacy and rights groups have argued that this is a fundamentally incorrect understanding. Children with I/DD grow into adults with I/DD just as all children grow into adults. Their bodies, minds, and emotions develop in ways more similar to than different from their peers without I/DD.

What are some of the effects of viewing adults with I/DD as children? Broadly stated, it leads to an inability or unwillingness to see past the disability to understand people with I/DD as the complex individuals they are, with the same capacities for love, joy, and sadness, and with the same rights to form relationships and to make mistakes as the rest of us. These issues are similar, though not identical, to those Elizabeth Reis discussed in Sex in the Nursing Home.

Since adults with I/DD are thought of as children, they are often treated as children and sheltered from sex education, romantic relationships, and physical intimacy. Though the impetus for protection often comes from a place of love and concern for the individual, it may lead to unfortunate, unintended consequences. Some people erroneously believe that:

Teens and adults with I/DD are asexual (in much the same way we perceive children as asexual).

People with I/DD may not be able to control their sexual desires.

Talking about sex will encourage people with I/DD to try inappropriate behavior.

People with I/DD won’t have relationships or children, so knowing about sexuality will only increase their sense of isolation.

As the advocacy network Autism NOW suggests, the “reasons” to shield adults with I/DD are actually based on myths, stereotypes, and misunderstandings, and they simply aren’t true for the vast majority of people. They might come from a good place but they’re generally misguided.

More accurately, people with I/DD develop diverse sexual and romantic interests just as everyone does, and they need the same quality sex education as children, teens, and adults. This is particularly important to prevent items two and three above. Everyone has the potential to make these sorts of mistakes regarding socially appropriate and safe sex, and only mindful education can address this issue.

The challenge is especially heightened for people with I/DD, who are often socially isolated, lack privacy, may have unsatisfactory access to physical accommodations, and are not allowed to make the same mistakes people without I/DD make in the due course of growing up. The following story from the “Stories from Self-Advocates” section of Self-Advocacy Online articulates this last point far better than I can:

Many of the myths about sexuality and relationships for people with I/DD do come from a place of genuine concern that they need protection. But this comes, again, from thinking about adults with I/DD as children. This concern leads to sheltering and leaves individuals to pick up understandings about their bodies and desires from peers and media — information that is likely to be wrong or misleading.

To make matters worse, people with I/DD face a disproportionate risk of sexual abuse and exploitation. Planned Parenthood has quoted statistics that 50-90% of people with I/DD will be sexually abused at some point in their lives. This fact may seem to justifiy the desire to shelter people with I/DD, but, as Planned Parenthood, The Arc, Autism NOW, and other organizations argue, this “protection” only contributes to people with I/DD not knowing how to protect themselves. Sex education helps individuals recognize safe and unsafe relationships, understand the importance of consent, and know what to do in abusive situations.

All of this, then, boils down to the need for quality sex education for people with I/DD and presents another perspective on the BBC story about DE and PQ. If we can trust the assessment that DE and PQ wanted permanent contraception, then it seems only right that DE have the same access to a vasectomy that anyone else would. In this sense the decision respects DE and PQ as adults in a loving relationship.

It also reiterates questions, though, about access to sex education and the responses to people with I/DD having children. To make things even more complicated, these present-day ideas about people with I/DD are themselves grounded in a long, troubling history of coercion and mistreatment. I discuss these issues in part two of this piece.

Further Reading

Notes

It’s unclear whether the birth of the child or the separation itself caused the strain. One question this article doesn’t answer is how DE and PQ responded to the birth of their child. The BBC reports that the birth “had a ‘profound’ effect on both families,” but not on the effect of the individuals themselves. It goes on to explain that the families responded by taking steps to make sure a second pregnancy didn’t occur, including separating the couple and “supervising all contact between them.” DE “suffered considerable distress during his separation with his girlfriend and had his confidence shaken by the loss of his independence.” Distress at such a forced separation seems quite understandable, but doesn’t necessarily mean they were traumatized by the child itself. The degree of DE’s and PQ’s I/DD is also unclear, most likely to rightly protect their privacy, but seems to also have bearing on the case. Return to text.

About the Author

Adam Turner has a Master’s degree in history from the University of Oregon and is currently writing a dissertation on the intertwined histories of genetic counseling and advocacy around intellectual disability. Adam also works as a web developer with a love of clean, standards-based markup and accessible, user-centered design.